Late Stage Caregiving
What Constitutes Compassionate Care Over the Long Haul?
Primary caregivers for people with many chronic illnesses may be “on duty” for five years, two years, or less, depending on the circumstance. But people with Parkinson disease typically live a normal lifespan, so caregivers can be serving in that role for many years.
How do you best prepare for and follow through with that challenging and (often) rewarding duty? Tips from veteran PD caregivers from across the country include the following:
- Establish a pattern of taking care of your own physical and mental health needs as well as those of your loved one. i.e. don’t put off your mammogram or neglect your own morning walk because of feeling too busy or preoccupied meeting your care recipient’s needs. Martyrdom is overrated as a coping mechanism! If you failed to establish yourself as a co-priority early on, it’s never too late to start.
- Budget both time and money to meet your own physical and mental health needs. Draft a written caregiving plan that gives you one hour per day and one day per week to yourself; the need for private time and relaxation is a basic human need and a caregiver right. To continue giving effectively to the other person, you have to restore your own energy and recharge your battery on a regular basis.
- Prepare and train one or two individuals to serve as your backup team. Regularly schedule at minimum a long weekend away from caregiving responsibilities. This may be something as simple as turning off the cell phone and checking in to a nearby hotel, but it is essential for long-term caregivers. This is not “selfish” – If you become disabled or die prematurely from years of overtaxing yourself, who would possibly be there in the same way for your loved one?
- Be mindful of potential caregiver burnout in your local helpers. For instance, an adult daughter living nearby with a job and children still at home may be as overwhelmed as you feel trying to assist you and the PWP. Be frank with long-distance family members in regard to how they might help: Come “fill in” for that long week-end, pay for dental work not covered by insurance, or the prescription co-pay that’s become out of reach. Phoning every week at an expected time, or just sending a card every month, can be the small gesture that provides amazing comfort in the midst of great distress.
- Investigate, in advance of need, local assisted living and skilled nursing facilities in the event you can no longer care for your PWP at home. Take a friend or geriatric care manager with you to visit a few places and get an idea of the available choices. This is a great advantage over “starting cold” following a hospital stay and discharge necessitating finding a place on short notice.
- Familiarize yourself with palliative (comfort) care options such as hospice, so that if and when the need arises, you will know where to turn.
- Never underestimate the power of prayer or meditation to lighten caregiver burden.
Build your PD knowledge base
- Begin to build your knowledge base about PD and the various antiparkinson medications from the publications mentioned above and NPF's site exclusively about caring for someone with advanced Parkinson's disease: CareMAP.
- Don’t bombard your recently diagnosed loved one with every morsel of PD data that catches your attention. S/he is probably even more overwhelmed than you are with the implications of a chronic neurological condition.
- Discuss together how you will share this news with friends and family members. If you have children still living at home, choose a level of information and approach that is age appropriate.
Caution: Be prepared for an onslaught of free advice. Friends and adult children are notorious for suggesting “miracle cures” they’ve heard of, herbal supplements, or the latest article they’ve just read online about PD. Be polite, but run all ideas past your neurologist.
Want to Learn More?
Read this "Parkinson Report" article:
New Resource Hub for Caregivers
Request a free copy of this NPF manual:
Managing Advanced Parkinson Disease
Caregiving content reviewed by: Susan Imke, RN, MS, Family Nurse Practitioner, Senior Health Solutions